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HIV & AIDS Home-based Care

Introduction

Much of the care for people with HIV and AIDS is provided at home by immediate family and friends, as well as by home-based care organisations. Providing care for people with HIV and AIDS in the home has many potential benefits for both HIV infected and affected people, yet there are many failings in the support given to carers.

Why HIV and AIDS home-based care?

It has been estimated that up to 90 percent of illness care may be provided in the home by untrained family and associates, and up to 80 percent of AIDS related deaths occur in the home.
1 This location of care is determined greatly by the scale of the epidemic.

In a number of African countries the adult
HIV prevalence rate is over 15%, with the number of infected people as high as 5.6 million in
South Africa, 3.4 million in
Nigeria, and 1.4 million in Mozambique.
2 Typically, countries with high prevalence have overstretched health systems, a lack of resources and among the lowest levels of hospital beds and health workers per person. The AIDS epidemic itself contributes to the overburdened health sector. In one study in
Kenya, for example, 50-60% of public hospital beds were found to be occupied by HIV patients.
3

The diminished capacity of many countries’ health sectors means having people with HIV cared for at home, or home-based care, can be more appealing to governments than treating them at hospital. One South African hospital reported patients’ average stay decreased from 14 days to 3.5 days when referred to a home-based care organisation.
7

A potential benefit of home-based care is that sick people are surrounded by people they love and are familiar with, so they can also receive more flexible and nurturing care. They will also not be exposed to hospital-based infectious diseases. As people with terminal illness generally spend their final moments at home, improving the quality of their care at home also removes the cost and distress of travelling to and from the hospital when they are weakest.

Furthermore, in being cared for at home, a person with HIV may be in a more ready position to work or look after family members for short periods of time while the primary earners work. The time the family would otherwise use travelling to and from hospital can instead be spent on house work and looking after other family members. Expenditure on transport and hospital costs is also reduced.
8

Home-based care often results from necessity; as mentioned, health facilities may not be able to cope and furthermore, fear of
stigma and discrimination from doctors and nurses directed towards people living with HIV could deter people from seeking care in a medical setting.
9 The costs, both direct (i.e. paying for transport) and indirect (i.e. time lost from work) associated with going to hospital regularly also mean that being cared for at home is often an inevitability rather than a choice.

What HIV & AIDS care is needed at home?

Although people living with HIV and AIDS can be healthy and strong and live perfectly ‘normal’ lives they can experience a range of AIDS &
HIV symptoms that will affect their day-to-day life, and for which they will need care and assistance. In a survey of home-based care AIDS patients in Malawi just one in seven were able to live as if they did not have the disease. Around a third needed help with washing, walking and going to the toilet.
10 Another study in South Africa found that 16-17% of those who had AIDS could not control their bladders or bowels and needed help getting on and off the toilet. A similar proportion required help with washing themselves. Poor sanitation makes many of these tasks all the more difficult. At the time of the study, less than half of the households had a tap and only one fifth of rural homes had access to a flush toilet, with a quarter having no access to any form of toilet or latrine.
11

Given the often debilitating effects of AIDS, people living with HIV and AIDS may need assistance performing basic household tasks. These can include washing, cooking, feeding, cleaning, purchasing household essentials, going to the toilet and other needs not necessarily specific to HIV and AIDS.

More HIV related tasks may include purchasing, administering and supporting adherence to ARV drugs and medication for
HIV related pain if the infected person is receiving treatment, as well as helping with nutrition, as the person’s diet may differ from other members of the household. Monitoring and recording progress, making notes of events such as toilet visits, fluid intake and symptom occurrence are other tasks that can be undertaken by family and home-based care workers and volunteers.
12 These very practical measures are in addition to seeing to the person’s social, psychological and emotional needs – often termed ‘psychosocial’ needs – which everyone has but which are often broader and more severe if living with HIV.

Who provides HIV and AIDS home-based care?

Family and friends

Family members and friends provide the majority of home-based care for people with HIV and AIDS. Among this group, however, the provision of care falls disproportionately to
women and older people. In one South African study, over two-thirds of family caregivers in households affected by HIV and AIDS were women or girls.
13 It is estimated that half of all older people in areas severely affected by AIDS are involved in caring for older
children with HIV and/or AIDS
orphans.
14 This burden of care assumed by women and the elderly has been recognised at the highest levels. The United Nations’ 2006 Political Declaration on HIV/AIDS advocates "providing support and rehabilitation to these children and their families, women and the elderly, particularly in their role as caregivers".
15 At an awareness raising concert former South African president, Nelson Mandela, specifically mentioned these carers as deserving of more attention:

“Women don’t only bear the burden of HIV infection, they also bear the burden of HIV care. Grandmothers are looking after their children. Women are caring for their dying husbands. Children are looking after dying parents and surviving siblings.“ Nelson Mandela
16

Home-based care organisations

Home-based care organisations are the other important care providers and consist of trained health workers or volunteers linked to a hospital, NGO or faith group, for example. These people make visits to people’s homes for perhaps one or two hours. They may assist with much of the care provided by families including household chores and providing and cooking food, as well as performing more clinical tasks such as administering pain relief or medication. They may also make referrals for more professional medical help.

They should also train existing primary family carers on how best to safely perform day-to-day tasks such as bathing, lifting and bandaging the patient. In such cases there may be no distinction between the caring activities provided by primary family carers and those done by home-based care organisations. Sometimes, a voluntary caregiver from a home-based care organisation will in fact be a patient’s primary caregiver.
17

Maintaining regular contact with a home-based care organisation may also relieve an ill person or their family's sense of isolation. Furthermore, this relationship can serve as a gateway to accessing avenues of psychosocial support during the patient’s illness and following their death.
18 One study found home-based care visits strengthened existing carers’ emotional strength, underscoring the need for this type of intervention as well as highlighting the psychosocial impact of unsupported care.
19

Community members’ skills and knowledge should also grow if the home-based care programme extends its reach into the wider population, educating people both about prevention measures, as well as training them to become community based volunteers themselves. Individuals’ involvement in such initiatives can make them more employable, and may help reduce HIV-related stigma in the community.

Home-based care kits

Home-based care kits contain the essential items that a caregiver needs when caring for someone with HIV in order to alleviate symptoms, promote hygienic practices, prevent the spread of disease, administer
ARV drugs and monitor and record progress. The ideal contents of each kit vary depending on who the kit is designed for – clinical or non-clinical staff – as well as local needs, resources and guidelines.

Among the range of items that a kit could contain are mild pain killers such as aspirin and paracetamol; medication such as antifungals, antibiotics and antihistamines; multivitamins; bandages, cotton wool and swabs for dressing and applying medication to wounds; antiseptic soap; disinfectant; disposable and heavy duty gloves; plastic sheets; aprons; anti-diarrhea tablets; aqueous cream and petroleum jelly. Additionally, one-off items such as raincoats, umbrellas, bicycles, steel hand basins and pots, and lanterns are supplied in some home-based care kits. Uniforms such as a cap, shirt and jeans are also found in some kits.
20

Problems with HIV & AIDS home-based care

Most of the HIV and AIDS home care is carried out by family members who have no contact with professional help and suffer through lack of support.
21 This means that infected people may be inadequately looked after despite the best efforts of their carers and families. Studies have shown that the most effective home-based care programmes involve ongoing support for their workers, support from local communities and integration within existing health systems. However, many home-based care programmes lack these elements.
22

Inadequate help from home-based care organisations

While home-based care organisations are valued by their patients there are weaknesses in how some home-based care programmes are delivered. Carers’ workloads may be very heavy and they are often unable to make frequent home visits or stay with individual patients or households for very long. Any failures of home-based care often stem from the shortage of investment in the individuals and organisations that carry out the work. It should also be remembered that home-based care organisations cannot attend to patients around the clock, so there are limitations on what they should be expected to do. While they should be able to help with daily tasks such as changing bandages, assistance with more frequent occurrences such as going to the toilet will mostly be done by family members.

In one survey, some primary caregivers felt that home-based carers did not give them adequate attention and were only interested in the sick person. Insufficient material assistance such as food was also mentioned. Furthermore, lack of communication between the families and home-based care groups meant visits were irregular and occasionally stopped without notice.
23

Limited resources

The necessary supplies that should be provided in home-based care kits are very often inadequate. In a survey of home-based care organisations in South Africa, less than a fifth were able to provide the complete health department list of recommended contents.
24 Less than a quarter of home-based care kits in the survey contained mild painkillers, and vitamins and iron supplements were largely unavailable. Most of the home-based care organisations share individual kits among at least six carers who in turn have multiple patients. This inevitably creates problems over how and when to allocate the home-based care kits.

With the ‘lay’ kits costing as much as US$130 and professional kits costing $US160, the biggest obstacle to providing them was lack of funding and being unable to pay staff to procure them. There was also no standardised system for tracking their distribution or utilisation. Limited stock and not knowing where to find the home-based care kits were other reasons for not using them, as was the non-replenishment of supplies after their initial provision by the health department. Organisations that did not use such kits provided basic items on an ad hoc basis.
25

For home-based care organisations lacking in resources, greater coordination between them could facilitate sharing and bulk purchasing of supplies leading to lower costs. Monitoring and evaluation of home-based care kits would also ensure they are being tailored to the precise needs of the individual.
26

Some researchers were able to make contact with only half of the nearly 900 home-based care organisations throughout South Africa that they tried to reach, suggesting that hundreds were no longer operating or were so poorly funded that they could not afford a telephone. Understaffing and high turnover of volunteers as well as low accountability were put forward as other difficulties facing home-based care groups.
27

Risks faced by carers

Caring for someone whose mobility and bodily functions have deteriorated can place great demands on the health of caregivers. Carers may risk their physical health when assisting someone, perhaps heavier than themselves, with tasks such as getting out of bed or moving around the home. One study of both primary and voluntary carers found most suffered physically as a result of caring, with the most common problems being headaches, body aches, back aches and exhaustion.
28 Sudden and recurring headaches also affected some carers. Some elderly women physically affected by their care work had existing ailments including arthritis, diabetes and hypertension, with one 75-year-old woman cited in a study having headaches, body pain and weakness of the heart through looking after her daughter who was in her end of life stage.
29

Women primary caregivers were found to take on the most physically demanding tasks including bathing patients, helping them go to the toilet, changing soiled nappies, clothing and sheets, and obtaining water, sometimes a long distance away. A lack of support from other family members was found to be a significant factor in the overburdening of primary carers.

For the voluntary home-based care workers in the study, walking long distances in the hot sun to reach their patients, as well as the sheer number of people that they had to attend to, contributed to work overload and burnout.

Close contact with patients’ faeces, vomit, and other bodily fluids creates health risks for the carer. This risk is made worse in areas where there is poor sanitation and where the carer does not take precautionary measures such as wearing rubber gloves, either through lack of appropriate knowledge or resources. Although there are anecdotal reports of carers becoming infected with HIV there is little documented evidence of this.

Fear of sexual abuse and rape was also found among voluntary caregivers, especially among women caregivers visiting men who lived alone.
30

The risks of injury and infection associated with caring for a sick individual point to the need for such care to be supported through visits by home-based care groups. These could alleviate some of the burden, encourage wider community participation, and provide education and resources that could reduce the risk of infection and physical harm.

The burdens placed upon carers of sick people living with HIV highlight the scale of the activities they undertake to enhance the quality of life of their dependents, yet also reveal the importance that home-based care programmes have in relieving mental and physical suffering for both patient and carer.

Economic burden on the family

When a family member falls sick as a result of HIV, not only does that individual’s inability to work lessen family income, so too does the fact that carers will spend less time making money. In a survey of over 700 South African households where someone was either sick or had recently died from AIDS, more than a fifth had diverted time from work or informal income-generating activities to provide care in the home.
31

Furthermore, at the time the earning potential of a household is diminished, the cost of treatment, medicines and other healthcare provisions constitute an added financial burden on carers. One study in
Botswana found that families do not have the resources to cover the cost of caring for sick relatives and often have to use their own wages for things such as food, washing soap and transport to hospital.
32 This meant that, on average, the caregivers were spending their entire monthly earnings on caring for sick relatives and had to rely on a small government allowance and support from community members to make ends meet.

While the assistance of a well-resourced home-based care programme does not eliminate the need for families and friends to divert some attention from work to care for their sick relatives, it can nevertheless make more time available for caring activities.

Attention given to HIV & AIDS home-based care

Many governments have acknowledged the need and value of caring for people living with HIV and AIDS in their homes. In South Africa, this was recognised by the government in 2001 as being an effective care measure when the government called for the establishment of 600 home-based care programmes by 2005. The following year the first national conference was held exploring the issue and recommending steps for its development.
33 In 2002, the World Health Organization published a framework for establishing community and home-based care programmes in poorer nations in response to the growing realisation of their valuable role in dealing with the epidemic.
34 National guidelines have been established by various countries including Kenya, Tanzania and Malawi.
353637 In November 2008, the first Zambian Caregivers Day was held, with speeches by the country’s first president and the US ambassador who delivered a message on behalf of former First Lady Laura Bush, acknowledging the work of the 18,500 volunteers who had made visits to 93,000 homes affected by HIV and malaria.
38

However, despite the recognition of the vital care work that goes on in the home, many carers and home-based care organisations are not sufficiently supported. Inevitably, people living with HIV suffer due to this inadequate care.

“Home-based care...Should not be regarded as a cheap solution. The state does not provide nurses who provide home-based care, so they should really empower the home-based care workers” Chloe Hardy, Aids Law Project, University of Witwatersrand, South Africa
39

Home-based care should not be promoted as a ‘quick fix’ solution to caring for people with HIV or as a way for governments to shift their responsibility as the provider of care. Most carers’ work continues unnoticed and unrewarded by outside authorities, leaving many to suffer physically and mentally. Therefore, investment and development in care giving at home – provided both by home-based care groups and primary care givers – is required if the burden is not merely shifted from the more formal health care sector to people’s homes. There are numerous benefits that care in the home can provide and these should be realised to their full potential.